I don't have much information on my mom's case. She is 71 and was diagnosed this June. It is so scary for me. Some of the survival time frames for high risk are so short.
She has been on a 3 drug treatment for 2 months and thank God her numbers have gone from about 99 to 10, which means she can look into the stem cell transplant [SCT]. She is very scared and doesn't know if she can survive it.
Is is possible to be high risk and live more than 5 years without a transplant? Some reports show survival time span of only 2 years.
She has the chromosome 17 deletion also, which I hear is very bad.
Please let me know what you think.
Thank you
Debbie
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Debbie W - Name: Debbie w
- Who do you know with myeloma?: mom
- When were you/they diagnosed?: june 2014
- Age at diagnosis: 71
Re: Expected survival with chromosome 17 deletion, no SCT?
Debbie,
Take a deep breath. I know this a scary time for you and your Mom.
First off, please ignore the survival stats you see on the web. They are dated and don't reflect the current reality and what's possible with all recent drug advances. More importantly, every person is different. Based on great advice from others on this forum, this was one of the first things I stopped looking at when I was first diagnosed about 20 months ago.
An SCT is not the only game in town, regardless of one's risk. Many people choose not to consider an SCT as a front line therapy choice (including myself). Her doctor should be able to explain the choice between a drug-only therapy approach and that of an SCT-based approach.
If he won't, I would consider getting a second opinion from a specialist that is a bit more open minded on the topic. I want to be clear that I'm not saying don't do an SCT, but she should be clear about her options and risks so that she can make an informed decision.
When you say she doesn't think she can survive an SCT, why is that? Is she generally in frail health or is she simply scared about the procedure? Her doctor should already be considering her current medical condition as he evaluates whether an SCT would be a viable option or not.
Yes, a chromosome 17 deletion (del 17p) can potentially classify your Mom as being high risk. Patients with this deletion generally do have a poorer prognosis than those patients without it. But this doesn't automatically mean that your Mom in particular has a short life sentence and there are other factors that come into play.
However, it does mean that she needs to be working with a top multiple myeloma specialist that understands the nuances of treating high-risk multiple myeloma and who can carefully choose the right drug regimens. In the case of del 17p, some multiple myeloma drugs and treatment protocols work better than others.
Which drug combo is she on now?
BTW, I'm not sure what you mean when you say "her numbers have gone from about 99 to 10". What "number" are you talking about (there are many) and what is the unit of measure (%, g/dL, etc)?
Generally, people look at things like the plasma cell % (as measured during a bone marrow biopsy), M-Spike and the involved free light chain value and/or free light chain ratio when talking about how they are responding to treatment.
Lastly, you might find this article by Dr. Rajkumar to be insightful regarding multiple myeloma prognosis in general.
Dr. S Vincent Rajkumar (Mayo Clinic), "Understanding Prognosis In Multiple Myeloma," The Myeloma Beacon, March 1, 2012.
Hope this helps a little.
Take a deep breath. I know this a scary time for you and your Mom.
First off, please ignore the survival stats you see on the web. They are dated and don't reflect the current reality and what's possible with all recent drug advances. More importantly, every person is different. Based on great advice from others on this forum, this was one of the first things I stopped looking at when I was first diagnosed about 20 months ago.
An SCT is not the only game in town, regardless of one's risk. Many people choose not to consider an SCT as a front line therapy choice (including myself). Her doctor should be able to explain the choice between a drug-only therapy approach and that of an SCT-based approach.
If he won't, I would consider getting a second opinion from a specialist that is a bit more open minded on the topic. I want to be clear that I'm not saying don't do an SCT, but she should be clear about her options and risks so that she can make an informed decision.
When you say she doesn't think she can survive an SCT, why is that? Is she generally in frail health or is she simply scared about the procedure? Her doctor should already be considering her current medical condition as he evaluates whether an SCT would be a viable option or not.
Yes, a chromosome 17 deletion (del 17p) can potentially classify your Mom as being high risk. Patients with this deletion generally do have a poorer prognosis than those patients without it. But this doesn't automatically mean that your Mom in particular has a short life sentence and there are other factors that come into play.
However, it does mean that she needs to be working with a top multiple myeloma specialist that understands the nuances of treating high-risk multiple myeloma and who can carefully choose the right drug regimens. In the case of del 17p, some multiple myeloma drugs and treatment protocols work better than others.
Which drug combo is she on now?
BTW, I'm not sure what you mean when you say "her numbers have gone from about 99 to 10". What "number" are you talking about (there are many) and what is the unit of measure (%, g/dL, etc)?
Generally, people look at things like the plasma cell % (as measured during a bone marrow biopsy), M-Spike and the involved free light chain value and/or free light chain ratio when talking about how they are responding to treatment.
Lastly, you might find this article by Dr. Rajkumar to be insightful regarding multiple myeloma prognosis in general.
Dr. S Vincent Rajkumar (Mayo Clinic), "Understanding Prognosis In Multiple Myeloma," The Myeloma Beacon, March 1, 2012.
Hope this helps a little.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Expected survival with chromosome 17 deletion, no SCT?
Thank you so much for your reply. I am new to the forum and did not see your reply till just now.
My mom is non-secretory so the numbers I mentioned are her plasma cell numbers from a bone marrow biopsy. This is the only way we can track her disease. She was very active and an extremely hard worker in her house and yard from morning till late at night, but this has wiped her out. She has been so tired from receiving straight treatment since July 2. She has had stomach issues and swollen ankles which hasn't helped and I think she is deathly afraid of breaking a bone, so she doesn't do much now.
Her local oncologists didn't offer the SCT, thinking she was too old, but a specialist at Roswell Cancer Institute said she should have it. I guess I don't know and I think only God knows how much time a person has on earth, but we want to make sure we are doing everything possible. That's why I wanted to know if anyone had a similar experience.
Thank you again for your reply!!
My mom is non-secretory so the numbers I mentioned are her plasma cell numbers from a bone marrow biopsy. This is the only way we can track her disease. She was very active and an extremely hard worker in her house and yard from morning till late at night, but this has wiped her out. She has been so tired from receiving straight treatment since July 2. She has had stomach issues and swollen ankles which hasn't helped and I think she is deathly afraid of breaking a bone, so she doesn't do much now.
Her local oncologists didn't offer the SCT, thinking she was too old, but a specialist at Roswell Cancer Institute said she should have it. I guess I don't know and I think only God knows how much time a person has on earth, but we want to make sure we are doing everything possible. That's why I wanted to know if anyone had a similar experience.
Thank you again for your reply!!
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Debbie W - Name: Debbie w
- Who do you know with myeloma?: mom
- When were you/they diagnosed?: june 2014
- Age at diagnosis: 71
3 posts
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